Morgellons disease, illuminating an undefined illness

Introduction

This review of 25 consecutive patients with Morgellons disease (MD) was undertaken for two primary and extremely fundamental reasons. For semantic accuracy, there is only one “proven” MD patient: the child first given that label. The remainder of inclusive individuals adopted the label based on related descriptions from 1544 through 1884, an internet description quoted from Sir Thomas Browne (1674), or was given the label by practitioners using similar sources. Until now, there has been no formal characterization of MD from detailed examination of all body systems. Our second purpose was to differentiate MD from Delusions of Parasitosis (DP), another “informal” label that fit most of our MD patients. How we defined and how we treated these patients depended literally on factual data that would determine outcome. How they were labeled in one sense was irrelevant, except for the confusing conflict rampant in the medical community, possibly significantly skewing treatment outcomes.

Case presentation

Clinical information was collected from 25 of 30 consecutive self-defined patients with Morgellons disease consisting of laboratory data, medical history and physical examination findings. Abnormalities were quantified and grouped by system, then compared and summarized, but the numbers were too small for more complex mathematical analysis. The quantification of physical and laboratory abnormalities allowed at least the creation of a practical clinical boundary, separating probable Morgellons from non-Morgellons patients. All the 25 patients studied meet the most commonly used DP definitions.

Conclusions

These data suggest Morgellons disease can be characterized as a physical human illness with an often-related

Actual Morgellons Lesions

delusional component in adults. All medical histories support that behavioral aberrancies onset only after physical symptoms. The identified abnormalities include both immune deficiency and chronic inflammatory markers that correlate strongly with immune cytokine excess.

The review of 251 current NLM DP references leads us to the possibility that Morgellons disease and DP are grossly truncated labels of the same illness but with the reversal of the cause-effect order. Further, the patients’ data suggest that both illnesses have an infectious origin.

Laboratory Data

CBC aberrancies were common but often intermittent. They included abnormal variable RBC indices, occasional low-grade anemia, low white cell count, and high monocyte count. Other abnormalities included low Natural Killer cell (CD56 + CD16) number and percentage, high or high-normal insulin level (in all tested) and intermittent elevation of serum calcium, globulin level, and A/G ratio. Sedimentation rate was mid-range “normal” or lower with only one ANA positive. Antidouble stranded DNA antibody level was negative in all tested.

Real Morgellons Fibers

Occasionally IgG subclasses 1 and 3 were low. Commonly elevated markers supporting chronic inflammation included C-reactive protein and TNF-alpha. Other occasionally abnormal laboratory parameters present in chronic inflammation or infection included IFN-gamma, Homocysteine and serum Leptin. Most patients showed serologic evidence of infection (antibodies) with one or more unexpected potentially pathogenic microorganisms despite testing for only a few species.

Conclusion: Proposed Characterization of Morgellons Disease

The authors conclude that Morgellons disease is a multi-systemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but “unverified”) parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon.

The term “Morgellons disease” came into being in the 21st century in an attempt to identify an illness for which no name existed. The entry of this new label into a phenomenon of extreme controversy may at first appear to further that controversy. Typical of the evolution of medical nomenclature, however, the problem may always have been with semantics; in particular the use of assumptions unsupported from failure to investigate the total physical patient. The “index” case that failed to fit similar earlier diagnostic labels was seen as “different” principally because its observer looked beyond the presumed signs and symptoms of the truncated “look-alike” phenomenon labeled “Delusions of Parasitosis”. Trabert’s review of 1,300+ cases makes clear that only a fraction of the total signs of that presumed illness were used to create the DP diagnostic framework.

Our attempt to gather as much physical evidence on Morgellons patients as possible was based on the extremely large number of abnormal physical signs among those we evaluated earlier. We gathered as many clinical parameters as possible (within the fiscal constraints of “today’s” medicine) in order to see whether the abnormalities among them were consistent and if so, whether their pattern was explanatory. The unfolding mechanism strongly suggests a chronic infectious process.

The specific agent candidates will not be addressed further until evidence of their presence is available and their presence can explain the signs and symptoms we now find in all Morgellons patients. There remains considerable work to do in collecting more data from these patients to create a credible Morgellons disease Case Definition. We submit that the same holds true for Delusions of Parasitosis patients. Much of that work may be now under way by the U.S. Centers for Disease Control and Prevention (CDC) through contract with Kaiser Permanente’s Northern California Division of Research. [http://www.cdc.gov/unexplaineddermopathy/] Meanwhile, the consistent abnormal findings in the data above may be used to improve clinical diagnosis and possibly initial treatment in current patients. Perhaps of considerable importance to a journal dedicated to Case Reports is what the juxtaposition of Morgellons disease and Delusions of Parasitosis suggests. As noted by Trabert in his meta-analysis, creating a Case definition primarily from isolated cases allows uncontrolled use of assumptions that vary considerably in order to keep an unresolved conclusion constant. Where many cases are used, consistency of similar data forces a far more valid and consistent conclusion. Until the machinery of science is in full gear and provides understanding of this phenomenon, simply “paying attention”, maintaining skepticism, practicing a simple physical exam and using commercial laboratories judiciously must suffice. Once the breadth and severity of what we are encountering is understood, the resources and motivation for its solution should come. When sufficient, we anticipate the framework of several medical specialties may be modified.

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